“The most important thing to me from the MPN Research Foundation has been as a source of information. The more I know, the more I am able to deal with this disease.”
*This story is a patient's first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult with your physician (preferably an MPN specialist) before making any therapy or lifestyle change.
Cliff Reyda has been living with an MPN since 1992. He was forty-seven when it was discovered during a routine physical that his platelets were very high. What the doctor said at that time has been burned into Cliff’s memory to this day, “The good news is that your platelets are too high for you to have a bone tumor.” Cliff was diagnosed with Essential Thrombocythemia, which wasn’t considered cancer in 1992. For twenty-three years he didn’t have any symptoms from his ET. However, at the time he didn’t know night sweats were symptomatic of the disease and it wasn’t until many years later a doctor asked him if he suffered from this.
In 2016 Cliff transitioned to Myelofibrosis. As someone who experienced minimal symptoms with ET, this was quite a change. His major symptoms since progression have been anemia and aquagenic pruritus, a condition in which the skin becomes severely itchy after contact with water. At times Cliff was awake for six hours during the night because of itching. The anemia has also limited his activity, but Cliff says he is fortunate to not be receiving transfusions at this point as Procrit helps his hemoglobin.
Cliff is grateful Jakifi has reduced his spleen which he hopes will extend his life, and his itching has also ceased since starting Jakifi. He considers himself lucky that Jakifi was FDA approved just a few years before he transitioned to MF, but does hope a new drug will be developed soon should Jakifi stop working for him.
Although Cliff is taking it a little slower now because of his anemia, he’s still doing what he loves, gardening, spending time in nature, and visiting with friends. And with roots in Montana, Cliff loves getting out to explore places in the country as much as he can.
When asked about the foundation’s work he says, “The most important thing to me from the MPN Research Foundation has been as a source of information. The more I know, the more I am able to deal with this disease.” And his advice to others, “Learn as much as you can from others with the disease and make sure you have an oncologist/hematologist you feel comfortable with. Keep a log of your key lab tests and notes about any medical conditions.” For those newly diagnosed, “When you discover you have an MPN, don’t immediately think the worst will happen. Many patients have a normal life expectancy.” He says.
Contributed by Jennifer Acker
These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.